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My experience with this disease began on November 6, 2008. I noticed a few red spots on my calves after taking a shower one day and dismissed them as razor burn. For one week they remained on my calves and thighs, then suddenly spread to my forearms.
I was bothered enough to make my way to an urgent care facility (sort of like an emergency room) on November 11th, figuring I had possibly come into contact with something that had caused an allergic reaction. I was hoping this was the case even though my 'spots' or 'rash' never itched.
The doctor there was less than attentive and ended up thinking it was an allergy as well. He prescribed me a six day packet of prednisolone and told me to come back if it did not clear up.
The first part of the week I continued to get more spots, although they were not raised. The fifth day of taking the medicine, I noticed that the spots were again coming up raised and they were painful. They burned.
I was on vacation for the next five days. During that time, I experienced a [i:bf3985bd4d]massive[/i:bf3985bd4d] outbreak over 95% of my body excluding the face, upper chest, and upper arms. I visited with a doctor while on vacation who said I really should wait until I arrived home to have blood work done as this seemed very serious and would definitely need a follow up appointment.
11/21/2008 (a Friday), the morning after I landed, I imediately went back to the urgent care facility and saw another doctor who was completely taken aback by the distribution and severity of my 'rash.' She ordered a lot of blood work and told me she suspected I had Idiopathic Thrombocytopenic Purpura.
They wasted no time in referring me to a hematologist, but my appointment was not until the following Tuesday and I had to return to work on Monday morning.
Throughout the day on Monday I could feel the situation getting worse. My calves, ankles, and feet were swelling and walking was painful. Tuesday morning I dragged myself to work and only ended up doing marginal work until my appointment early in the afternoon with the hematologist.
She took one look at me and referred me to a dermatologist after ordering a bunch more blood work. She had the results from urgent care already so she didn't need to repeat those tests. She said my CBC came back normal, which ruled out the Idiopathic Thrombocytopenic Purpura, and she said that she thought it was Leukocytoclastic Vasculits, but that she wanted the dermatologist to do a biopsy to be certain. She told me not to go back to work until further notice.
The dermatologist was equally enthralled by the rash and swelling and biopsied me twice, which was incredibly painful. She prescribed me a diuretic and some tylenol 3, told me to go home and put my feet up and not do anything or go anywhere for the near future.
A couple of days passed and they finally got the results of the biopsy, which confirmed the diagnosis of LV. The dermatologist prescribed a topical cream to speed the clearing of the blood. Within a week, the cream was gone, but I was still experiencing small outbreaks.
I went to the store near the end of that week and ended up having to crawl through my car to get out of the parking lot because someone had parked too close to me. In that period of time, I broke out everywhere again. My feet swelled again and I was back to bed rest for three days.
My mother took one look at me after I crawled through the car and left an urgent message with the dermatologist requesting a visit. I didn't think that was necessary as I didn't want to go anywhere or see anyone and I had a follow up with her two days from then anyhow.
The doctor called me the following day and prescribed me a 14 day cycle of Prednisone, 20 mg pills. 60 mg for the first 6 days, 40 mg for four days, 20 for three days, and 1/2 pill or 10 mg the final day.
I noticed an improvement within a day. I did not break out in any new spots and my other spots started to fade quickly while I was on the 60 and 40 mg doseage. Since I came off that dose, I have broken out repeatedly and painfully. I am now at the end of the second to last day of the 20 mg dose, so I have one more 20 mg dose and the 10 mg dose to take yet, but I do not think they will make any difference or help to stop or heal any further outbreaks.
It is now December 14th, five weeks from the onset of this thing. They tested me for everything they could think of including a viral infection, bacterial infection, and I had not taken any over the counter medication in the month preceeding this disease. Every test they ran came back negative.
I am going to call my doctor in the morning and explain to her that I am not getting better and that I am, in fact, getting worse. I am supposed to start work again on the 17th, but I am afraid I will be back at the start of this whole thing all over again without a clear outcome.
So far nobody can tell me if or when this will clear up and it is taking a huge toll on me emotionally, physically and socially.
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